RESEARCH ARTICLE


‘I asked myself why I was having this difficult child’: Care Burden Experiences of Black African Mothers Raising A Child with Autistic Spectrum Disorder



A.G. Lentoor1
iD
, Thuli Mdluli1
iD
, M.P. Maepa1, *
iD

1 Department of Clinical Psychology, School of Medicine, Sefako Makgatho Health Sciences University (SMU), Ga-Rankuwa, Pretoria, South Africa



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Creative Commons License
© 2023 Lentoor et al.

open-access license: This is an open access article distributed under the terms of the Creative Commons Attribution 4.0 International Public License (CC-BY 4.0), a copy of which is available at: https://creativecommons.org/licenses/by/4.0/legalcode. This license permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

* Address correspondence to this author at the Department of Clinical Psychology, School of Medicine, Sefako Makgatho Health Sciences University (SMU), Ga-Rankuwa, Pretoria, South Africa; Tel: +27 78 523 4047; E-mail: mokoenamaepa@gmail.com


Abstract

Introduction:

There is increasing recognition that raising a child with Autism Spectrum Disorder (ASD) is stressful and challenging, particularly for mothers in resource-constrained countries. The aim of this study was to learn more about the experiences of black African mothers raising children with ASD and to gain a better understanding of the care burden.

Methods:

Semi-structured interviews were conducted with nine purposively recruited mothers of children with ASD and analysed using interpretative phenomenological analysis.

Results:

The findings revealed that caring for children with ASD puts a tremendous psychological, emotional, and financial strain on mothers. Mothers commonly faced social judgment and stigma, which manifested as internalized self-blame, isolation, and social exclusion for both themselves and their children.

Conclusion:

The findings highlight the critical need to increase psychosocial support for mothers of children with ASD who live in resource-constrained countries.

Keywords: Autism Spectrum Disorder (ASD), Caregiving burden, Child, Mothers, Resource-constrained countries, Psychosocial support.